Founded by the World Federation of Hemophilia in
1989 and held annually on April 17, World Hemophilia
Day is dedicated to raising awareness of hemophilia
and other inherited bleeding disorders. Between that
and the new release of our book,
Caregiving Ties that Bind, which relates the
lessons we have learned from our 108 cover
interviews with caregivers with famous faces, it
occurred to me that one of my favorite celebrity
interviews was not with a movie star, politician or
singer, but someone who is proudly A Mom.

Jeanne White’s son Ryan is best remembered
for the battles he faced as a teenager living with
AIDS in the early days of that disease where fear
and misunderstanding were rampant. Ryan’s
legacy of strength and commitment was outstanding
for anyone facing the obstacles he faced; but more
impressive yet, considering he was a teenager. Ryan
contracted the disease through an infusion of Factor
8, an early hemophilia treatment. Although the
treatment made him feel better, he tragically
received a tainted dose before appropriate blood
testing was available. Ryan passed away in
1990 at the age of 18, but his mission lives on
through Jeanne. She attends Hemophilia walks and is
an advocate for everyone living with the disease.
Hemophilia is a bleeding disorder in which the blood
doesn't clot normally; it is usually inherited.
People born with hemophilia have little or no
clotting factor, which is needed for normal blood
clotting. In general, symptoms are internal or
external bleeding episodes or "bleeds".

We recently ran an interview with
Kimberly Haugstad, the Executive Director of the
Hemophilia Federation of America. The
responses we have received from caregivers whose
loved ones are living with hemophilia remind me so
very much of my conversation with Jeanne many years
ago. It seems that the ties that bind, no
matter what the illness or disease your loved one
faces, remain the same—love of family.